Baclofen Pump | Surgery and After Care

Baclofen pump placement surgery

If you and your child’s doctors decide that a baclofen pump is appropriate, the surgery is usually performed the day after the trial. Surgery lasts about 2 to 3 hours. The length of surgery will be reviewed at your initial appointment with the surgeon. If your child has had a spine fusion, the procedure may last a little longer.

After the surgery, your child will need to stay in a bed for 24 hours to help prevent headache. After that, your child can get out of bed after getting used to sitting up. You child will stay in the hospital for two to five days after surgery, depending on his or her individual recovery.

At first, the pump is programmed for a very low dose. The team will see your child on an outpatient basis every one to two weeks for small adjustments until the spasticity is improved.

Caring for the incisions

Your child will have one incision at the abdomen (belly) and one incision over the lower spine (low back). There will be dressings over the incisions that include Steri-Strips (white tape strips) across the incisions, which will fall off on their own. Keep them dry for one week after surgery. If they don’t fall off, you may take them off two weeks after surgery. Your child may bathe, swim or submerge the incisions after two weeks if the incisions are healed.

For a few days to weeks after surgery, your child may have some swelling around the top and sides of the pump. This is from fluid and it is normal. An ace wrap or abdominal binder around the belly helps provide pressure to limit the swelling and to improve comfort. Your child should wear the binder for six to eight weeks after surgery.

If you notice any drainage from the incisions or any redness, contact the Baclofen Pump Team on call through the hospital pager at #7867 (PUMP).

Surgery after care

Activity

Your child will need to limit bending, twisting or turning at the waist for six weeks. This limits stress on the incision and helps the catheter heal into place in your child’s back. Regular activities are fine.

Flying on an airplane is OK, but you should let airport security know about the pump because it may set off security alarms.

Medications

You may give your child acetaminophen (Tylenol®) every four to six hours for pain if needed.

Never stop anti-spasticity medicines like baclofen or Dantrium suddenly. This can cause withdrawal symptoms and may lead to illness. These medicines need to be stopped slowly. Once your child has a good result from the pump (which may take a couple of months), we will make a plan to begin stopping the oral baclofen.

Constipation

Constipation will sometimes get worse with a baclofen pump. Your child should have a bowel movement at least every two to three days. Keep your child on their bowel medicines if they use them. Ask your child’s doctor for help with this if needed.

School

Your child should be able to return to school within a week or so after coming home from the hospital. The school nurse will not need to address the pump but may need to reposition the binder to ensure it remains in the correct position in the first couple of months after surgery.

Coordination with other health care providers

Be sure to let you child’s other health care providers know that he or she has a pump.

Pump Information

Always carry the emergency card and plastic guide that will be mailed to you after the surgery by Medtronic. This card will inform emergency personnel of the pump.

Follow-up appointments

Appointments will be scheduled with the baclofen pump nurse practitioner every one to two weeks to adjust the dose of baclofen given through the pump until the correct dose is reached. Your child will also see the neurosurgeon about four weeks after surgery to check the incision for proper healing.

Refill procedure

Your child’s baclofen pump will need to be refilled every two to six months depending on the dose. On the front of the pump, there is a silicon port (opening) in the middle. A long, thin needle is used to inject the baclofen through the silicon into this port.

Your child will have the baclofen pump refilled in a clinic at Boston Children’s Hospital or a Boston Children’s Hospital satellite clinic. The visit takes 30 to 45 minutes.

The skin over the pump will be numbed so your child will not feel the needle stick. The numbing cream is put on at home and should stay on for at least 60 minutes before the procedure starts.

The area over and around the pump will be cleaned with a topical antiseptic solution to eliminate any germs in the area.

A special paper drape is placed over the stomach with an open circle to expose the pump. A small plastic template is placed on the pump to help locate the refill port.

A needle is inserted into the port of the pump. The old medicine in the pump is replaced with new medicine. The numbing cream used earlier will prevent your child from feeling any pain.

Once the refill is complete, a device is used to program the pump to indicate that it has been filled with new medicine. The device will also report when the next refill is due.

The nurse practitioner will schedule another refill appointment for your child before you leave.

We keep track of when your pump needs to be filled. If you need to change a refill visit, call your nurse practitioner immediately. You must reschedule the visit when you call. If you miss a refill visit, your child could have withdrawal symptoms and need to stay in the hospital.

Boston Children's Hospital has been named the #1 children's hospital in the nation by U.S. News and World Report for the fifth year in a row! It's an honor that we could not have achieved without you. On behalf of every member of our Boston Children's team, thank you for inspiring us to be bolder, dream bigger, and make the impossible possible for our patients and families.